Wednesday, December 21, 2005

Anna had an appointment with the pediatric ophthalmologist today. Her eyes (the uveitis) have not improved in the past few months, despite the methotrexate and the Pred Forte drops. So beginning this weekend, we'll increase the amount of Methotrexate she receives.

The inflammation in the eyes has no outward symptoms, and Anna has no complaints. At least that's good! She continues to dance---she loves it, and after the Holiday Dance Program (and seeing the older girls dance), she said she wants to continue until she graduates from high school! I think we'll take one year at a time for now! I took a few pictures at the program. Maybe after Christmas I can get one posted here.

Tuesday, November 15, 2005

I took Anna for a blood test yesterday, and that reminded me of some conversations around our house. When Anna was very young, she would scream and cry during the blood draws. I think my older kids tagged along for maybe 2-3 of those events (when they were too young to stay at home by themselves). Even though they were out in the waiting area, they could hear her getting hysterical each time. As Anna has gotten older, she has calmed down significantly (we changed labs---found a place close to home that is a small operation, and the lab techs have worked well with Anna and have gotten to know her). Since Anna no longer cries and gets hysterical, she has often encouraged her older siblings to come along to see that she doesn't cry. In her words, she says, "I just scwinch!" (Meaning she shuts her eyes tight and makes a face when they stick the needle in.) Her older brother, Joel, every time she says that, shakes his head, rolls his eyes, and says, "Anna, that's not a word." WELL!!!! Joel was looking up a word in the dictionary the other day, and he found the word "scwinch!" It actually IS a word, and Anna was using it most appropriately! We all laughed! Anna still can't convince Abby and Joel to come along to watch her get her blood drawn, though!

Thursday, November 10, 2005

Anna and I just returned from an eye appointment. It wasn't bad, but not great. Just mildly frustrating. Both eyes continue to have a trace of inflammation, but the left eye is worse of a trace than last time. So for the left eye, we have to increase the Pred Forte drops to twice a day. I feel like this uveitis stuff is such a intricate balancing act--worrying about pressures rising with the increase in drops (although Anna's pressures are at 17 and 18 right now---not bad by any means). Last time she was on drops twice a day, they went up into the mid 20's, and we don't like them to be there. I've never had much patience for intricate balancing acts. Guess this is building my character.

At least the drive to and from Hershey was GORGEOUS through the valley with the autumn colors and the deep colors on the distant mountains and the huge autumn cumulous clouds! Gotta appreciate the small things in life!


Wednesday, November 02, 2005

Anna's JRA Guestbook

Let's use this thread for the guestbook for Anna's JRA Page! If you visited Anna's JRA Page and want to post a 'hello,' please do so! I look forward to hearing from you!

Tuesday, October 25, 2005

I'm creating this blog so that I can more easily update everyone on Anna's JRA Journey! I haven't been very good at updating my webpages since I took a part-time job three years ago, and since my older kids have more school work/projects to do on the computer!

The last I updated was in January 2004. (See the "Anna's JRA Journey" link from

Since then a LOT has happened. Anna's stomach couldn't tolerate the Sulfasalazine. We found that out during an incredibly long and difficult week in the early winter of 2004. Lots of playing phone tag with doctors and stomach convulsions and Anna crying big, silent, crocodile tears after each meal. So we took her off Sulfasalazine.

My memory is a bit fuzzy at this point (that was 18 months ago!), but I think she was just on Vioxx for awhile. She was doing okay, but there were times her knees were getting stiff after sitting, and her eyes flared just a little. So if I remember correctly, we added Methotrexate (the pills). That helped. She was on a rather low dose, and still on Vioxx, and I think she was taking eye drops (Flurometholone) at the time, too. Then Vioxx was pulled off the market. I had just received a three-month supply, so we continued using it (because we've always liked Vioxx, and Anna never experienced adverse side effects).

Even after our very last dose of Vioxx, Anna continued to do well. So well, in fact, that her doctor decided to try lowering the Methotrexate (we never know how she'll do unless we try!). That was in the spring of 2005. Her doctor was hoping that maybe if she continued to do well, we could get her off medications before school began. That was not meant to be. Once we lowered her dose, her eyes flared. So we increased methotrexate (back to what she was taking initially---7.5 mg weekly). During that time, her pediatric ophthalmologist moved to Ohio (we STILL miss him!!!!!), and although it had nothing to do with the switch in pediatric ophthalmologists, Anna's eyes didn't respond at first to the stronger eye drops prescribed for the flare. So we increase the methotrexate again. Anna started vomiting at 2:00 a.m. each week after her bedtime dose of methotrexate.

So in July, we learned to give injections to Anna, and she now receives methotrexate by injection. (12.5 mg. weekly). She does okay with that, except that she's starting to experience anxiety each week during the hour before her shots, when we put Emla cream on to numb the area. I'm thinking through and praying about this, trying to figure out the best way to help her.

When I think back to the time when I first created Anna's JRA page (quite a few years ago), I think that it's been a rather long haul, although we've been very blessed that Anna has such a mild case of both the JRA and uveitis. It's just that when Anna was first diagnosed, I thought maybe within five years or so, she would grow out of it or something, and that we'd be able to go for at least some length of time without any medication. Not so.

Anna is now eight years old, and except for daily medication (folic acid & Pepcid Complete) and weekly medication (methotrexate) and daily eye drops (for the uveitis), she seems like a very normal child. She is a sweetheart---with a very gentle and compassionate disposition.